Experienced caregivers offer best advice and support

Thanks to each of you who offered comments on my list of what caregivers need and for sharing additional resources that you've found helpful, such as the Alzheimer's Foundation of America website and quarterly caregiver magazine "Care ADvantage."

Many of you also shared creative strategies for caregiving, insightful ways that you cope and personal sources of strength.

One example came from Bill who said that he used his experience as a U.S. Marine as a source of strength.

He was able to draw from those years of military service knowing that when you're tired you'll go a lot further when you conserve strength, rest whenever you can and take care of yourself.

Without that, said Bill, you're useless to yourself and those who depend on you. He also offered wisdom on the stages of grieving when you love and care for someone living with Alzheimer's.

I believe that many caregivers would say that the best support, advice and help they received wasn't from a doctor or other professional but rather came from fellow caregivers who, like Bill, have lived or are living the caregiving journey firsthand — the veteran caregiver.

Recently, David Shenk, award-winning, national-bestselling author of six books, including "The Forgetting," did an interview with Mike Cuthbert on AARP's "Prime Time Radio" program.

In the interview, he stated that the best resource for those dealing with Alzheimer's is experienced Alzheimer's families — the caregivers. "They have already spent years learning to navigate this harrowing terrain," said Shenk.

The AARP interview also introduced Shenk's new documentary series, called "Living with Alzheimer's." It features four exceptionally well-done short documentaries about families who persevere in the face of Alzheimer's.

"My mission ... to wander into this strange and complex landscape, and bring back rich stories of adaptation and perseverance," said Shenk. And this is exactly what he's done. Families, including persons living with the disease, are portrayed in all their vulnerability and humanity in these artistically created real-life stories.

The documentaries underscore how families are flung into a sad, confusing new world without much of a road map.

And yet, caregivers like Bill, who have navigated this murky terrain for quite some time may hold a compass.

They offer profound compassion, understanding, insight and wisdom that are deeper and richer than most outside of the "dementia world" can provide.

For families on the dementia path, veteran caregivers can pave the way for hope and healing — our society needs you and thanks you.

My wife's neurologist told me the he is sure that her dementia has progressed to Alzheimer's. Now I must tell her and our adult children at some time. I think the sooner the better,i.e., don't pretend or let her think that she does not have it. Am I on the right track in this?

Albert

September 3, 2013 3:51 p.m.

I work with a friend who has either dementia/Alheimer;s but to me her case and condtion are very different. She has had problems off and on the 60 years I have known her and has almost had one severe manic attack which lasted for days and she did some very unusual things. She is living in a Memory Care Unit however her docter says the things I am doing with her are helping her more than any of the medication. I play mind improving games with her, look at old pictures and have her identify the people, ask her to work math problems with me etc. etc. The questions and such I already know the answers. Her case and conditon is very differnt from what afflicted my husband. I believe his was Pick's Disese which is often misdiagnoxed as Alzheimers.

Jan

August 26, 2013 9:56 a.m.

For those of you interested in the documentary series discussed above, here's where to find it:
http://livingwithalz.org/about-the-series/
Thanks for your interest and support.

MayoClinic.com staff

August 25, 2013 9:21 p.m.

Are the documentaries over. I would love to see them. Are they available on CD?

Gina

August 22, 2013 6:24 p.m.

first, i would like to say, no one has the &quot; answers&quot;; i am an RN, with a BS degree, work in a psychiatric hosp., on the senior care unit, dealing and caring for dementia patients; my father is 92, has moderate dementia, and lives with my us. i work full time, the evening shift. it is so difficult to watch his decline, mentally. we are blessed he is in such good physical health. i have tried him on Namenda and Aricept, but his mental state is worse on the drugs, confusion, drowsiness; i believe each individual has their on path. my ultimate goal is to keep him home with us as long as possible. our most unfortunate problem is of the 4 children, one has a different desire, which has resulted in most unnecessary division in the immediate family. this has caused me more distress and heartache than thc care involved for dad.

shelia

August 22, 2013 8:55 a.m.

For Caregivers of Alzheimer's and Dementia patients/relatives. Anything that lessens the day to day burdens and worries is a great thing. A new Company on the Med Id front is I.D.Mii international and their website is www.idmii.com This company is a world wide web based 24hr medical data base and ID company that offers not only a sense of security to the patient by having emergency info at hand in the case of en emergency but also allows the Caregivers to have all needed medical and personal info at hand when going to a new Dr. or getting someone else to take the person(s) for medical care. Well worth looking at website. Designed by a heart patient with serious issues but has even more benefits to the Alzheimer's group. With every membership a $10 dollar donation goes to the medical research of your choice. www.idmii.com

Charlie

August 15, 2013 3:10 p.m.

What advice do you have for me to help my caregiver friend come to grips with the fact that his loved one really does not know him and he should feel less concern/guilt about taking breaks ( even for a 1/2 day)from his institutional visits? His abilities and quality of life need attention badly.

Debbie

July 21, 2013 5:24 p.m.

Sorry I meant if didn't have all facts see I am to young to get lost at firt tought stress but then my son said you never for get my fav food and hes right I even denied not knowing how to do my belt spelling getting lost sleeping forgetting what time to pick him up for school all thing I never ever would off done have no drug history ao addiction of and sort then became really sad and moody tired not sure and migraines the stoped my life I never had headaches I felt like forest gump and some time would get talkative to not sure if that's itbut have had three head injurys in past and this is even had writing not sure but have had mri and ct have sleep disorders never had before

Jen

July 21, 2013 5:15 p.m.

Iam wondering I know some people get alzheimer's from TBI if you have it or symtoms could it go misdignosta by mri and ct if did have all facts and old head trauma I just want in put no expext advise ok please!

Jen

July 21, 2013 3:02 a.m.

My father of 85 cares for my mom who is 81 years old. A lovely, loving lady assists my mom with bathing and dressing. It is difficult to deal with my dad accepting the situation my mom finds herself in. Their house doctor is very impressed with the way my dad cares for my mom. With the information I find in your blog as well the advice of others I can give my dad the necessary guidance. We take each day as it comes and ensure that my mom is happy, loved and cared for. I live far away from my parents, but I talk to my dad every day, supporting him and advising him to the best of my ability. Thank you for all the advice.

Isolde

July 18, 2013 6:48 p.m.

Hygiene or the lack of it becomes one of the issues in caring for a person with Alz Dx. If the person with Alz Dx is still capable of having a shower or bath by himself/herself, the carer needs to remind the person everytime. However, in the case of the neighbour of your mother, if your mother is not the carer, perhaps your mother should inform the relations of her neighbour who will assist the person concerned.

Paola

July 16, 2013 8:47 a.m.

What do you do when the person who has the disease does not bath and keeps wearing the same clothing.She lives by herself next door to my mother.Also she yells at my mother when my mother is trying to help her.Thank you in advance.

kim

July 14, 2013 8:44 p.m.

Hi Jo, I went through those months of trying to justify that I did not do nor say anything wrong to make him angry with me. I got angry, too, as at times, it became too much to bear. Then I realized what was causing my husband's anger. At first, he knew he forgot, but did not want to acknowledge it. Then being reminded that he forgot made it worse. Where before he was the head and breadwinner in the family, suddenly he has to rely on me (I am only the wife) to remember everything that he used to do. That could be a terrible blow to a male's ego. Alz Dx affects not only the person who has it, but also the nearest and dearest. What helped me to understand was to do researches on Alz Dx, what extended my patience was to practice Yoga and meditation, what helped me endure the angry moments was to encourage my husband to walk with me in the mornings and for both of us to enjoy what we see along the way. It takes a lot of understanding and patience to do these, but as you live daily with the surprises of Alz Dx, this becomes routine. It is sometimes hard not to respond to anger,but it is easier to live without it.

Paola

July 13, 2013 9:58 p.m.

My husband gets SO furious when I try to help him do something or I tell him something he has forgotten that we need to do. I used to think he was angry at me, but now I think he is angry with himself and takes it out on me.
Usually he forgets by the next day, but it takes me a little longer, even tho I respond as sweetly as I can and hold my anger.

Jo

July 12, 2013 7:22 a.m.

The family caregivers are the unsung heroes. And, in being a caregiver for my husband for over 7 years, I believe this blog and newsletter are the best and most current. God bless all the caregivers who contribute through this blog and those families that don't.

Vanessa

July 11, 2013 7:24 p.m.

For Anita, perhaps a small idea regarding your efforts. Does your mother like sweets, specifically ice cream? I make malted milks out of Boost and lots of good ice cream. When nothing else is appetizing, the &quot;malts&quot; are eaten. Sometimes it helps if I leave it a bit thick and feed my husband by the spoonful.

Shirley

July 11, 2013 3:28 p.m.

I agree with Paola, love covers a multitude, and it's proven time and again, when my husband can't believe what I tell him, example: &quot;where's my wife?&quot; He can't believe that it's me, until I give him a big hug, say who I am, and tell him how much I love him, in tears he says &quot;I'm so happy for you, etc.&quot; It all changes quickly and he is relaxed and is him old self again! Keep praying for wisdom, endurance and words of love, God knows our needs and He gives, yes, there are difficult days, at that time, I make myself busy, make cookies, pull out the vacuum, or.......it helps me, go often and give a big hug n a kiss, it's like medicine to his whole being! I'm blessed as he still has his good humor, even if its more chil-like, it gives us good laughs which we need often.

Blaine

July 11, 2013 12:25 p.m.

Some days I can only get 250 calories with Ensure given with medicine into my mother. She has been incontinent with urine for many years and recently is now incontinent of bowel movements. She wants to sleep in the late morning hours and stays awake all other hours. If I try to encourage her to eat, she becomes paranoid saying the food is poisoned. Other than having periods of feeling guilt that I am not doing enough to get calories in her, any suggestions about her care.

Anita

July 11, 2013 12:11 p.m.

Making time to take part in a regular support group was invaluable for us. If you are not near one there are several facilitators who are willing to help you by phone. Please contact the ALZ office in your state. Many of our members drive long distances to share their problems and joys.. Dementia does not have to be a lonely journey. There are also support groups in many states for other dementias, the AFTD is expanding in coop with ALZHEIMER'S. Each of us can learn to accept our loved one and adapt and accept the changes that we cannot control. Thanks Angela for your unceasing support.

Moira

July 10, 2013 7:27 p.m.

I agree that the best source of information about the intricacies of caring for a family member with Alz Dx are the family carers themselves...24/7 they are faced and challenged by day-to-day adaptation to how to make the life of their loved one with Alz Dx as regular as possible,putting aside themselves most of time. The family carers are dictated by their love to care without bounds... it can become very exhausting at all levels, but while there is love, the family carer continues to give care. There were times in the past when a new or different action from the person with Alz Dx surfaces,and I would ask the professionals &quot;why this happens?&quot; I would be told &quot;just observe and tell me again when it happens.&quot; I realized then that not even the professionals could help me in my daily task .... so I observe, write down and learn everyday how to deal, cope,manage , care for and live with the existence of Alzheimers in our household. One important thing : Alz Dx taught me to extend my love,understanding and patience enabling me to continue giving my care to my husband. Love develops understanding,understanding leads to patience. And patience leads to endurance.

Paola

July 10, 2013 4:41 p.m.

Thank you for your great blog post. I am the Executive Operating Officer at Bayside Park in Emeryville, CA. We are regularly discussing different memory care situations and how best to work with our residents. I think your point about relying on families of those who suffer from Alzheimer's is a great idea - it is something we do as well.
If anyone is interested in learning about our senior community, you can read about us here www.baysideparksenior.com.
Take care

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